Giulia- Italian MRKH Advocate shares her story & research project for MRKH
- The MRKH App
- Jul 8
- 2 min read
Hello everyone! My name is Giulia, I am an Italian Roki girl and I dream of being a midwife when I grow up. I am currently finishing my last year of obstetrics at the University of Rome. The choice to become a midwife is linked to Rokitansky Syndrome, to support mothers during the most significant experience of their life, that is, the birth of their child, and to fill my heart with joy and satisfaction every day.
As my thesis I thought of bringing MRKH syndrome to highlight the psychosexual difficulties of Roki patients starting from the moment of diagnosis, reporting concrete data based on the personal experiences of each girl. All this has the aim of drawing greater attention to this topic that is perhaps still talked about too little, as well as to make us realize that (contrary to what each of us might think) we are not alone, but there are many of us in the world!
Why does my community need The MRKH App?
On social media there is an Italian association of Rokitansky syndrome that allows registration to a forum with only Roki patients. In addition, for several years there has also been a WhatsApp group to exchange information and advice regarding outpatient visits, intervention methods or even simply to have a word of comfort. I find that the creation of apps of this kind is a truly unique gesture and of infinite solidarity! It would be wonderful if we could create a virtual chain between Roki girls from all over the world. Unity is strength! And if we could use this strength to make ourselves heard and achieve further goals and benefits, it would be a great step forward for all Roki girls!
My research project:
ROKY PATIENTS: PSYCHO-SEXUAL IMPACT, UTERINE TRANSPLANT, AND THE DESIRE FOR MOTHERHOOD
I am a student at the Faculty of Midwifery at Sapienza University of Rome. I invite you to take part in the following questionnaire, which consists of short and quick questions. Its aim is to highlight the personal experiences of girls and women affected by Rokitansky Syndrome, the psycho-sexual impact it has on them, the social support received, the desire for motherhood, and the topic of uterine transplant.
To carry out a comprehensive study, the first part includes questions related to sexual distress (FSDS-R) and the psychological impact of the syndrome (HADS) prior to undergoing vaginoplasty or using vaginal dilators. This will be followed by questions aimed at analyzing changes in quality of life six months after surgery or after using non-surgical vaginal canal expansion techniques, using tools such as FSFI, HADS, and MSPSS questionnaires. The survey concludes with two final questions regarding uterine transplantation and the desire for motherhood.
I am available for any further information and/or clarification at the following number: +39 3392973833.
Thank you in advance to all who take a few minutes to participate in this study, which will contribute to the understanding of a topic that is unfortunately still little known and studied, offering a unique space for comprehension and the opportunity to share your own experience.
All data will be processed anonymously, in accordance with privacy regulations. The information collected will be used solely for academic research purposes
Comments